Who has the final say about end-of-life choices?
When a patient can make choices about their health, it is best to get those choices straight from the patient. Many times, a patient cannot make such choices, and the family must decide what to do. Your loved one may have left a clear guide to end-of-life choices, such as a living will or an advance directive. Even with this guide, it may be hard to figure out what your loved one would want.
If there is no written guide, choices usually are made by a smaller group of family members. Laws can differ by state. However, the usual order for making choices is the spouse, then adult children, and then parents. If you have to make the choices, you can talk about them with anyone (for example: a minister, a friend, your family doctor, or a counselor).
How do I figure out what my loved one would want?
Your doctor will advise you to make choices based on what your loved one would want. Sometimes, the choices you make for a loved one may be different from what you would want for yourself. For example, you may want everything possible done to keep your parents alive, but your parents might choose comfort care only.
Ask for a meeting with your doctor. Ask your doctor to sit down and talk about what will happen to your loved one in different situations. For example, if the patient’s heart stops beating, the treatment stops working, or the treatment seems to be hurting more than it helps.
Talk about what the future holds for your loved one. Before you can make a good choice, you and your loved one’s doctor should talk about the likely future of the patient’s illness and health. Ask the doctor what to expect. Choices people make about health care usually are different if there is a good chance of the patient going home, compared with no hope of getting better. If you and the doctor see your loved one’s future differently, you should talk about these differences.
Talk about your loved one’s values. Try to remember how your loved one acted when friends needed treatment, surgery, or other health care. By remembering these talks and experiences, you may be able to figure out what your loved one would have wanted in the present situation.
Ask your doctor for advice. With your loved one’s values in mind, ask your doctor what he or she would recommend. An example might be, “We are sure that our mom would not want any extreme measures in a situation where she was not going to be able to recover and return home. Given that attitude, what do you suggest we do about her current condition? What would you recommend doing or not doing to manage her future care?” And, “What would you recommend for her comfort?”
What choices do I need to make?
You need to think about all of the health care options for your loved one, not just CPR (cardiopulmonary resuscitation). For example, if your loved one lives in a nursing home, would it be his or her choice to be moved back and forth between the hospital and the nursing home for each illness at the end of life? Would it be better to set up a “do not hospitalize except for comfort measures” order? There also are important choices about when and how to treat pneumonia and heart failure. In some cases, treating an illness prolongs suffering, so it may be best to treat only the symptoms. You should think about when and if to change to comfort (palliative, or hospice) care, rather than care aimed at trying to cure the illness.
Many patients do not want to, or cannot, eat or drink. They may not feel hungry or thirsty. Many families ask for a feeding tube because they are afraid that not using one would seem like starving a loved one to death. A feeding tube may not make the patient more comfortable. The tube can cause infection, pain, and more awareness of discomfort. Without a tube, a patient who loses interest in food typically slips into a coma. In these cases, a patient usually does not feel pain, hunger, or thirst.
Can I change my mind?
Your loved one’s health may change. This may change your choices for how best to follow your loved one’s wishes. Your doctor may try a treatment to see if the patient gets any better. When it is clear that the treatment is not working, it is okay to stop. You can choose to restart treatment at any time.
Is there anything else I should remember?
Make sure you know the plan. Ask your doctor for a summary of the steps you have agreed to. That way you will know what to expect.
Where can I get more information?
Let Me Decide: http://www.viha.ca/healthpoint/let_me_decide
Five Wishes: http://www.agingwithdignity.org